Thinking about getting an ostomy is extremely stressful. In Ostomy Thoughts Parts 1 and 2, you saw how much I was dreading the idea. To recap, an ostomy is when they pull your intestine (colon=colostomy, small intestine=ileostomy) through your belly then attach a bag to it to collect fecal matter. I’d been dreading it as long as I’d had Crohn’s Disease (~25 years). I could never wrap my head around living like that and how humiliating it would be. I always said I’d rather die than have one.
I’d always been told that with the advances in modern medicine, it was unlikely that things would ever get so bad that I’d need an ostomy, but there I was facing it was a real possibility. My doctors had been trying Entyvio for a few months, but I was still getting progressively worse. As you saw in the last entry, I had to go back into the hospital because I was struggling to keep down food and drink. Stelara had just been approved in the market, but it would be difficult to obtain and I may have already been too far gone.
So there I was confronting the thing I’d been dreading more than death. I still didn’t know how to feel. I’d always said I’d rather die, but 2 things kept me from committing to that. 1) I’d already been suffering for so long that I didn’t want to endure anymore and 2) I was engaged. Bowing out is ok when you’re single, but when you’re a part of something you care about, it’s much more difficult to give up. I didn’t want to let my fiancé down. I was actually looking forward to a life with her. At the same time though, how could she ever love me and find me attractive if I had part of my intestine dangling out spewing crap uncontrollably into a bag. How could I ever love me or feel attractive?
I didn’t know what to do or how to feel. It was all so much. I just wanted to run away, but I couldn’t. Such is life with Crohn’s Disease.
You really need to publish all these entries, Dan. This one is excellent.